Mindy Kitei is a science reporter who has been covering CFS/ME for more than 20 years. Her commitment to people with CFS/ME has been unflagging, and her barbed criticism of the CDC's mishandling of the CFS/ME epidemic has been continual over the course of her career. On May 12, 2011, she delivered this fiery public comment at the CFS Advisory Committee (CFSAC) meeting.

" To the CDC and NIH scientists who have been ... sweeping a world-wide human catastrophe of 17 million people under the carpet, I say to you, 'Have you no sense of decency?'"

My name is Mindy Kitei. I’m a science reporter who’s covered ME/CFS for twenty years. Last June, I began my blog, CFS Central, in honor of my friend Nancy Kaiser.

I met Nancy in 1994, while working on an investigative piece for Philadelphia magazine called “The AIDS Drug No One Can Have” about the experimental HIV and ME drug, Ampligen.

Nancy had a severe case of ME. She had multiple seizures every day. When she tried to sit or stand, her blood pressure plummeted; she often crawled instead. She tried many experimental treatments to get well.

Nancy died on June 15, 2008. I naively thought she’d never succumb to the illness, as if by sheer will she’d keep herself alive.

Three other ME patients whom I interviewed in 1994 have also died of the disease.

Despite its gravity, despite ample evidence that ME is an infectious disease, the government treats it like a joke. The CDC and parts of the NIH have been playing a shell game: studying patients with simple fatigue or chronic fatigue or depression—but labeling them CFS patients.

Even when the CDC conducted its XMRV study, it studied the wrong cohort and refused to do an actual replication of the Science study. It’s just a different kind of shell game from the bogus psychological CFS studies that are the agency’s trademark.

To the CDC and NIH scientists who’ve been doing this ludicrous research for three decades and sweeping a worldwide human catastrophe of 17 million people under the carpet, I say to you: Have you no sense of decency at long last?

ME patients are suffering from a serious infection— most likely a retrovirus—but are told by charlatans to exercise and have a positive attitude.

Researchers in government and at universities, as well as the CFIDS Association, admonish desperate patients that taking anti-retroviral drugs is medically indefensible. When the healthy reprove the sick that they’re impatient and reckless and foolish and need to wait for treatment, I say there is no treatment, and where are the drug trials? Thirty years and not one approved drug and none in the offing.

ME patients should have the same freedom to try medications that AIDS patients had in the early days. The AIDS patients became their own advocates because there was no one advocating for them. The same holds true for ME patients now. Patients are gravely ill, and they have the right to treatment. To say that they don’t--that’s what is medically indefensible.

The U.S. government conducted the Tuskegee Syphilis Experiment from 1932 to 1972. The study tracked the progression of untreated syphilis among poor African American men but didn’t tell them they had syphilis. The men got sicker and many died. In 1997, President Clinton apologized to the remaining Tuskegee men. Clinton said: “What was done cannot be undone. But we can end the silence. We can look at you in the eye and finally say on behalf of the American people, what the United States government did was shameful, and I am sorry.” The United States government has watched ME patients suffer and die for 30 years, and has done nothing, and that is shameful.

In less than a year, more than 125 thousand patients from 108 countries and territories have found my blog, CFS Central. Patients write to me asking for help every day. Toward that end, I request a meeting with Kathleen Sebelius, Howard Koh, Francis Collins, Tony Fauci and Thomas Frieden to discuss how to turn this situation around, by funding good studies and finding effective medications.

About funding ME, Dr. Dennis Mangan said during this meeting: “We’ll use one dollar and try to make two.” I’m sure Dr. Mangan means well, but it isn’t enough. As AIDS activist Larry Kramer said years ago about HIV patients: “We are not crumbs.” After thirty years of neglect, ME needs research parity with HIV. We also need a czar who will oversee ME and report directly to President Obama.

Finally, we need to enact the ME/CFS Care Act. Much like the Ryan White Care Act for HIV patients, the ME/CFS Care Act will provide health coverage to needy patients.

In closing, I ask you, Dr. Wanda Jones, to ensure that this meeting occurs. Dr. Jones, will you help me?

The study referred to in this news report was published in 2011. (See below for a link.) The researchers compared cerebrospinal fluid from 10 healthy controls with the fluid from people with CFS (using the Fukuda case definition) and with Neurologic Post Treatment Lyme disease syndrome (nPTLS), two conditions that share common symptoms of fatigue and cognitive dysfunction. The rationale for the study was that "despite extensive research, CFS and nPTLS remain medically unexplained. There are no biological markers to distinguish these syndromes, creating diagnostic dilemmas and impeding research into understanding each individual syndrome."

After examining the cerebrospinal fluid samples, the research team discovered distinct sets of proteins which could accurately distinguish between the two illnesses and differentiated them from healthy controls. The study identified 738 proteins that were found in CFS, but not in either healthy normal controls or nPTLS; 2) 1,582 proteins that were not identified in CFS, but were in either nPTLS disease or healthy normal controls; 3) 692 proteins that were identified in the nPTLS patients, but not in healthy normal controls or CFS; and 4) 1,597 proteins that were not identified in nPTLS, but were identified in either healthy normal controls or CFS. (Of further interest the researchers noted that the CDK5 pathway, was "significantly enriched" for proteins found exclusively in the CFS fluid. The researchers pointed out that this signaling pathway has been linked to Parkinson's and Alzheimer's, two neurological diseases.)

The significance of this study is that the analysis of proteins in cerebrospinal fluid could serve as a biomarker for CFS.

"When Chronic Fatigue Syndrome Harms Vision: Blurring, intolerance to light, headaches from reading - these are just a few of the vision problems that often come with chronic fatigue syndrome." By Beth W. Orenstein Medically reviewed by Pat F. Bass III, MD, MPH (Originally posted on Everydayhealth.com March 4, 2010 http://www.everydayhealth.com/chronic-fatigue-syndrome/vision-problems.aspx) Many people diagnosed with chronic fatigue syndrome (CFS) also experience problems with their vision. Doctors believe that these vision-related chronic fatigue symptoms stem from brain dysfunction more than eye dysfunction. The signals that the brain sends to the eyes to let you know where you are and what you’re seeing may not be functioning properly when you have chronic fatigue syndrome. Vision Problems and Chronic Fatigue Syndrome: It’s All a Blur Most often, patients report having periods where everything appears blurry or seems foggy. “This will happen most commonly when they stand up and get lightheaded,” says Peter Rowe, MD, director of the Chronic Fatigue Clinic at Johns Hopkins Children’s Center in Baltimore. Other vision problems that chronic fatigue syndrome patients report include:

Difficulty or slowness in focusing on objects, usually those that are close up

Not being able to see objects in side or peripheral vision — some say they feel as though they have tunnel vision

Feeling dizzy and not being able to tolerate looking at moving objects

Seeing floaters and flashes of light

Being intolerant to light — “They find it uncomfortable to be in brightly lit rooms and outdoors in the bright sunshine,” Dr. Rowe says.

Feeling as though eyes are dry or that they burn, itch, or feel gritty

The Effects of Vision Problems on Activities Chronic fatigue syndrome patients usually find that their vision problems worsen toward the evening as they get more tired, Rowe says. As a result, people with chronic fatigue syndrome often find they have difficulty concentrating, particularly when reading. Vision problems and the related discomfort also can make it hard for CFS patients to finish everyday tasks. You may have difficulty judging distances, which makes driving a problem. Also, headaches and dizziness may make it difficult to stand to cook or clean. Getting the Right Eye Care When You Have Chronic Fatigue Chronic fatigue syndrome patients will often visit an optometrist or ophthalmologist when they experience vision problems. “But usually the eye exam of someone with chronic fatigue syndrome is normal,” Rowe says. Prescription lenses may not help because vision changes rapidly. If you do wear glasses, tints may reduce sensitivity to light. Because blurred or foggy vision is the most common problem, the solution is to improve the blood flow to the brain, Rowe says. “Visual blurring tends to be a temporary symptom and more related to lightheadedness and brain blood flow.” You may need to see a cardiologist or a neurologist to treat dizziness or lightheadedness. Certainly, if you have chronic fatigue syndrome and find that you can’t tolerate bright lighting, you should wear good sunglasses when you’re outdoors, Rowe says. Medications Can Help Vision Problems Dry or irritated eyes can be treated with drops that lubricate the eyes; they may provide temporary relief. Warm compresses may also help, as will drinking fluids. Some chronic fatigue syndrome patients experience the opposite problem: watery eyes often caused by allergies; in this case, you may find it helpful to take over-the-counter antihistamines. If you experience floaters, see an eye care professional immediately to be sure the cause is not a retinal tear. In patients with chronic fatigue syndrome, the floaters you see are generally harmless and do not require treatment. Over-the-counter pain medications or prescription drugs may help with headaches brought on by fatigue or dizziness. Patients are likely to find that their chronic fatigue symptoms, including vision problems, worsen the more fatigued they are. You should talk to your doctor about the best way to treat the CFS symptoms that you find the most disruptive and disabling.

Over the weekend, there were 1727 free downloads of Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition!

I would like to thank everyone who made this possible – the people who “liked” the book's Facebook page and website, those who shared the posts, those who talked about it on boards, those who posted the announcement on their blogs and on newsletters, those who reviewed the book on Amazon, and, of course, all those who downloaded the book.

This was a wonderful community effort, and I am deeply grateful to everyone who helped get this book to the people who need it the most.

On January 19th and 20th, Amazon.com will be giving away free copies of Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition. Dr. Charles Lapp calls this “the book every patient should have.” The book includes over 100 effective treatments, spanning the full range of pharmaceutical and complementary modalities, an in-depth discussion of symptoms with cross-referencing to appropriate treatments, the latest research into the causes and mechanisms of the illness, doctors' protocols, coping techniques, special sections for managing chemical sensitivities, dietary restrictions and the special needs of children, as well as extensive appendices covering resources, locations of doctors and clinics, local, national and international organizations, and internet ordering information. The book also features over 2600 useful links to further reading, research articles, and patient reviews.

The PPA helps uninsured and financially struggling patients who lack prescription coverage get access to prescription assistance programs that offer medicines for free or nearly free.

The PPA is free, confidential, and it is easy for patients to find programs for which they may eligible to apply.

Offers a single point of access to information on 475 public and private patient assistance programs, including nearly 200 programs offered by pharmaceutical companies.

PPA member programs offer more than 2,500 brand-name medicines, including a wide range of generics.

Helps patients contact government programs such as Medicaid and Medicare.

More than 40 of the assistance programs focus on the medication and health care needs of children.

The PPA provides information on nearly 10,000 free health care clinics and has connected more than a quarter of a million patients with clinics and health care providers in their communities.

Assists patients with chronic disease in learning about the types of new medicines in development that may help them.

Helping Millions of Patients

Since its launch in April 2005, the Partnership for Prescription Assistance (PPA) has helped connect nearly 7 million people to patient assistance programs that may meet their needs.

The patients helped through the PPA join the millions of other patients who have contacted individual pharmaceutical company programs directly over the years.

Who Is The PPA?

The PPA is sponsored by America’s pharmaceutical research companies.

These pharmaceutical research companies are working with doctors, pharmacists, other health care providers, patient advocacy organizations and community groups to educate patients about the PPA

More than 1,300 leading national, state and local organizations have joined forces with the PPA.

The groups behind the PPA include the largest and most influential in health care. They include the American Academy of Family Physicians, American Cancer Society, American College of Emergency Physicians, Easter Seals, National Association of Chain Drug Stores, United Way and the Urban League.

Web Site

A user-friendly Web site (www.pparx.org) enables patients to find programs for which they may be eligible to apply.

The PPA has dedicated a Web site to make it easier for patients to learn about help available for children, (kids.pparx.org).

Patients can download and print out patient assistance program applications immediately.

Toll-free Phone Number

Patients can call 1-888-477-2669 (toll free) to talk with a trained specialist who will guide them through the application process.

The call centers accepts calls in English, Spanish and approximately 150 other languages.

This short video demonstrates the action of rituximab, a monoclonal antibody which has been successfully used to treat ME patients. Rituximab (trade names: Rituxan, MabThera) was first approved by the FDA in 1997 for the treatment of non-Hodgkin's lymphoma. It is believed that rituximab destroys tumors by attaching to the CD20 receptor on B cells, causing the tumor cells to disintegrate.

Rituximab is also used in the treatment of autoimmune disorders, such as rheumatoid arthritis and Wegener's granulomatosis. In these cases, rituximab works by temporarily depleting the total number of B cells, which are important in promoting inflammation. Rich Van Konynenburg proposed that this is why rituximab works for CFS/ME patients – by reducing B cells, rituximab reduces inflammation.

The effect of rituximab on CFS/ME patients was discovered by accident. Two Norwegian doctors, Øystein Fluge and Olav Mella of Haukeland University Hospital, noticed that after treating a CFS/ME patient for Hodgkin's lymphoma with rituximab, she recovered from CFS/ME. This led the doctors to initiate a small study of rituximab on CFS/ME patients.

Three CFS/ME patients were given rituximab in an open-label trial (that is, the patients knew they were receiving the drug). All three patients experienced significant improvement; two of them responded within six weeks and the third had a delayed response, occurring six months after treatment. The positive effects lasted for between 16 and 44 weeks. After relapse, the patients were administered another dose of rituximab, with the same positive results. The investigators hypothesized that B cells of the immune system might play a significant role in CFS, at least for a subset of patients, and that “CFS may be amenable to therapeutic interventions aimed at modifying B-cell number and function.” The positive results of this, as well as a second open-label trial, led Drs. Fluge and Mella to conduct a larger study with a more rigorous design to test the effects of the drug. In 2009 they initiated a double-blind, placebo-controlled phase trial with 30 CFS/ME patients. As in the earlier open-label studies, the responses to rituximab were significant. Sustained overall improvements were noted in 67% of the patients (as opposed to 13% of the control group). Four of the rituximab patients showed improvement past the study period. The authors concluded that the delayed responses starting from 2–7 months after rituximab treatment, in spite of rapid B-cell depletion, “suggests that CFS is an autoimmune disease and may be consistent with the gradual elimination of autoantibodies preceding clinical responses.”

This is a short video of Dr. Jose Montoya of the Stanford Hospital Infectious Disease Clinic, speaking about CFS/ME. Dr. Montoya has completed clinical trials of valganciclovir (Valcyte), an antiviral, on patients with Viral Induced CNS Dysfunction, a subset of patients with Chronic Fatigue Syndrome. The data Dr. Montoya presented at the 2008 International Conference on HHV-6&7 indicated that after taking Valcyte, patients experienced significant cognitive improvement. He is currently collaborating with Ian Lipkin, Professor of Neurology and Pathology at the College of Physicians and Surgeons at Columbia University. Professor Lipkin is also Director of the Center for Infection and Immunity, an academic laboratory for microbe hunting in acute and chronic diseases. In this interview, Dr. Montoya addresses the onset and treatment of CFS/ME. He states that perhaps 11% of those who have acute infections of any kind may develop CFS/ME. Dr. Montoya believes that CFS/ME is an immune response to an infection. While the initiating infection may vary from patient to patient, he believes that CFS/ME is most likely caused by some common pathway in the immune system, which he characterizes as a “two-edged sword.” On the one hand, the immune system combats the infection, but on the other it may perpetuate an ongoing cycle of symptoms.

Dr. Montoya's primary clinical approach is through the use of antivirals. He has personally seen patients who have been ill for decades make recoveries after antiviral treatment. His main interest is in “brain fog,” the set of cognitive disturbances that inhibits a patient's ability to focus or to perform mental tasks.

Dr. Montoya's goal is to have a CFS/ME center where patients can recover, away from the stresses of life. “Our dream is to eradicate CFS from the surface of the earth,” he states. He believes that dream is within our reach. More information: Stanford Chronic Fatigue Initiative http://chronicfatigue.stanford.edu/

Dr. Byron Hyde and Dr. Kenny De Meirleir are two of the best-known names in the field of researching CFS/ME. Dr. Hyde is the director of the Nightingale Research Foundation located in Ottawa, Canada. His book, The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome remains the most comprehensive collection of scientific and clinical studies on CFS/ME ever published.

Dr. Kenny De Meirleir is a professor of physiology and internal medicine at the Vrije Universiteit Brussel in Belgium. Dr. De Meirleir has co-authored more than 80 studies on CFS/ME. He was also one of the authors of the International Consensus Criteria, the most accurate case definition for evaluating CFS/ME. Dr. De Meirleir's work is based on the premise that the gut wall in CFS/ME is abnormal, and that bacterial pathogens in the gut must be treated in order for antivirals or other treatments to be effective.

In this interview, conducted in 2008 by Öppna Kanalen Göteborgs Webb-TV (a Swedish open-channel station), Byron Hyde spoke about CNS involvement. His perspective is that CFS/ME is a form of brain injury. He considers it to be a diffuse injury that results in an inability to handle physical or mental stress. Once the brain is injured, the illness affects all body systems. He does not believe there is a general treatment for CFS/ME. However, he believes there is a great deal of collateral damage that must be treated on an individual basis.

Dr. Kenny De Meirleir spoke about his approach to treating CFS/ME. He performs normal tests to exclude major diseases, then does a series of tests for viruses, immune system and digestive system function. He believes that there is a predisposition to the disease when there is food intolerance or maldigestion. He considers maldigestion to be a major stress on the immune system, 80% of which is in the gut. When another infection occurs, “your bucket flows over and you go into a state where the immune system never comes to rest.”

In CFS/ME, Dr. De Meirleir treats food intolerance first (with diet). Then he treats gut dysbiosis (abnormal gut flora) and helps repair the gut barrier (leaky gut). He says it takes a year to recover gut function. Dr. De MeirLeir also spoke at length about subgroups. While this interview was somewhat shortened, there is a wealth of information here about the possible causes, mechanisms, and treatments for CFS/ME. Highly recommended.

Author

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About me:I'm a 25-year veteran of CFIDS. I know what it is like to be bedbound for long stretches of time. I also know what it is like to recover, and to relapse. But this blog is not about my personal experience. It is intended to be a resource - a collection of anything that might be helpful to the CFIDS community: book reviews, advice, CFIDS news, research, advocacy, opinion, who's who in our community, fundraising... and occasionally a bit of humor.

Disclaimer: I am not a doctor, which means nothing I write, no matter how sensible it may be, should be interpreted as medical advice.